Lives worth living: image

Based on a biased understanding of appearance, functioning and behaviour, many consider disability a misfortune that make life not worth living. To promote the rights and dignity of persons with disabilities, we must dismantle social ableism and embrace disability as a positive aspect of the human experience.

Discrimination and marginalization of persons with disabilities in society is a structural problem, underpinned by ableism, a form of discrimination based on disability. Ableism is a value system based on certain standards of appearance, functioning and behaviour, which are assumed to be necessary for living a fulfilling life. Many persons with disabilities do not meet those standards, so many people assume that they have a very low quality of life, no future to look forward, and that they cannot live happy lives.

A medical understanding has historically determined social approaches to disability, privileging prevention and cure over access and inclusion, and drastically reducing opportunities for the participation of persons with disabilities. At times, ableist views were the basis for supremacist ideologies like the eugenics movement of the past century, which resulted in the sterilization of countless women and girls with disabilities around the world, and the extermination of more than 300’000 people with disabilities during Nazi Germany.

The eugenics programmes of the past century have largely disappeared, but the ableist ideas behind them still influence current discussions about laws affecting normalizing therapies, assisted dying and other medical and scientific practices concerning disability.

Fighting these ideas requires awareness-raising and strengthening anti-discrimination measures, but those alone will not be enough. What we need is a cultural transformation on the way society relates to difference. This transformation requires bringing the narratives of persons with disabilities about their own lives to the centre of the debate. Embracing their experiences as a positive aspect of human diversity is the next frontier for us to conquer.

In this report, the Special Rapporteur makes recommendations for States to lead this socio-cultural transformation, implementing reforms towards the recognition of disability as part of human diversity.

Among her recommendations, she highlights the need to ensure that persons with disabilities participate in the elaboration of legislative and normative changes, to ensure that the results reflect their experiences and views. These include protecting their rights to life and personal integrity in the context of medical or scientific procedures, research and experimentation, and when assisted dying is permitted.

View the full report

Celebrating disability as part of human diversity

Catalina Devandas explains how the global movement of persons with disabilities is fighting back against ableism, and why the UN convention on the rights of persons with disabilities has been such a crucial ally in this struggle.
  • Copyright 2016